what do you do?

I almost forgot one funny thing. As I was leaving last night, one of the Care Staff asked me what line of work I was in. I launched into the always convoluted explanation of what it is exactly that a Management Consultant does.

She stopped me by saying: "Oh your Mum told us that she thought you were a Butler."

What? WHAT? Where on EARTH did THAT come from?

Mum never ceases to surprise me.

half a night's sleep

I'm jolted awake. It's dark and I'm disoriented for a few seconds. I realise that the phone is ringing. A wave of dread washes over me - a call at this time can't be good news.

"Hi Greg. I thought I'd better ring you because I'm short of money."
"Mum! It's....oh no...it's 4:45am. You can't call people at this time of night!"

Mum doesn't apologise. In fact, she sounds completely unconcerned, as if she hasn't heard me.

We go through the standard conversation where I explain that everything is paid for where she is, that there is money for her in the safe at Reception, that in the past 5 months she has not once needed money for anything. This is all news to Mum. She asks me what I mean by 'Reception', even though she often eats (for free, as a resident) in the café down there.

I get nowhere in trying to explain why it's bad that she's called me up in the middle of the night. It's something I struggle with, her lack of sympathy, or is it empathy? Mentally I have no problem accepting that Mum's ability to to do either has atrophied. But emotionally? That's a different matter. It's been years now since I could rely on her to feel sorry for me if something bad has happened, but I still am not used to it and I feel the pain of it afresh every time.

I may have to have the phone removed from her room if this happens again. It's a good thing that she's fallen out of the habit of calling anyone else. I think back to last year when I got a few sheepish phone calls from people asking me if there was anything I could do to stop Mum phoning them in the early hours.

Finally, I ask "What do you need money for Mum? What is it you want to buy?"

"Oh, I don't know.... food?"

reminder

Mum calls me: “Hello Greg. I thought I should call you because we haven’t spoken for quite some time now.”

This is Mum’s current favourite opening line, although she rings almost every day. I suspect, to her mind, that it makes her sound competent and like she’s managing me. Mum has thought about this call in advance, and she quickly switches to a theme I haven’t heard for a while: that she’s short of money. Once again I go through the familiar list: she doesn’t need money at the home for things like hair-dressing and chiropody; I’ve left money at Reception for her and she only has to ask for it; in three months she hasn’t once needed money for anything… This is all received as shocking news to Mum and she keeps interjecting with “Really?” or “I didn’t know that!”

Then our talk turns to this weekend. Mum wants to know if I’m going to visit her. I explain that the Easter weekend is the first time since January that I’ll have a chance to travel down South to continue clearing her apartment, and that I’m working in London on Thursday and will continue on to the flat afterwards. I start listing the things I have to get done down there. When I say that I’m going to lift the carpet in the bathroom to find out why the floor is swollen, Mum says: “But there isn’t any carpet in the bathroom – it’s just… lino” and I realise that she is thinking about where she is living now (her new bathroom is a wet-room). I explain that it’s the flat in Sussex I’m travelling down to, not where she is living now. Mum pauses for a moment, but I don’t immediately see the significance.

We’re finishing up the call soon after, and Mum says “Well, I’ll see you at the weekend, then.” I say that, no, I’m travelling down South to work on her old flat. She hesitates again and I suddenly realise something. “Mum… do you know where you’re living now?” Mum is indignant “Of course I do. In the place that… that… we bought for me!” “And where is that, Mum?” And she names her old address down in Sussex.

Mum’s memories of the last 5 months haven’t stuck in her head. This is why she cannot name anyone she’s living with or any of the staff members. Now it seems that she has elided her new home with her last one. I suppose it’s a positive sign that this place feels like home to her. I’m reminded again how good a thing it is that she is being looked after and I think how wretched her life would have been now if I’d not done anything a few months ago.

the way we were

I was in stuck in town recently and expecting a call back home, so I rang my house phone to listen for messages. It turns out that my machine insists on playing every stored message before getting to the new one.

As the first messages played I was transported back to last October and the calls I would get from Mum.

As usual, I feel guilty for this further betrayal in posting these calls but, at the same time, I want to preserve them as a record.

memory

The phone rings once, then stops. A couple of minutes pass and it rings, once, again. Mum's trying to call me.

I'm out of the bath by the time she gets it right. She tells me that everything is fine. She wants to know when I'm visiting next as it "has been a while" but then, when I protest, she claims to remember my visit last Sunday. She tells me that she'll have to go as she needs the toilet. I've worked out that this is her subconscious strategy to avoid facing that she's got anything wrong.

30 minutes later she's back on the line and sounds down in the dumps. I ask if the Screaming Lady is giving her a bad time. No, she says, but someone phoned her with some bad news. She can't remember who it was, but she names one of her relatives and says that the caller told her that he's very ill. Now, this relative died just after Christmas, and I know for a fact that Mum has been told the news 3 times since. I gently remind her and she claims to remember, and says she needs the toilet and that it's only because her life is so hectic nowadays that she made the mistake. Hectic?

As we end the call, I suddenly remember a conversation we once had when I was a teenager. Mum was talking about my childhood and the amazing places we lived while my Dad worked abroad.

"Whatever happens, Greg, no-one can take your memories away from you. You'll always have them."

Funny I should remember that now.

what I have learned in 2007: different types of dementia

2007 has been an education for me in lots of ways. Finally getting my Mum's problems investigated has meant that I've learned some distinctions between various types of dementia. I thought I'd share these here, for anyone reading who's going through a similar process.

'Senile Dementia' is a general term which groups all the different types of dementia experienced by the elderly into one category. Of course, the most common form of dementia is Alzheimer's Disease, accounting for roughly two thirds of cases in the over-65s. Alzheimer's Disease is a degeneration of nerve cells and their connections. Protein deposits tend to accumulate in the brains of Alzheimer's sufferers, but it hasn't yet been determined if this is a cause or effect of the problem. Progression of the disease can be gradual. I'm not going to write any more about this form of dementia, because there is so much information about it elsewhere.

However, there are several other types of dementia. Another form is Vascular Dementia. Vascular Dementia describes a number of conditions linked by a vascular cause (e.g. Hypertension, Stroke, Atrial Fibrillation). Often caused by a series of mini-strokes in the brain (Multi-infarct dementia), the disease tends to progress in a series of steps depending on the severity of each progressive stroke. Small steps leave the symptoms looking much like Alzheimer's, but it's equally possible for a major stroke to cause significant sudden loss of abilities. Each stoke cuts off or blocks blood flow to part of the brain, depriving it of oxygen and nutrients, leading to the death of that section. These dead areas, or lesions, are what a CT scan picks up.

Then there is Lewy Body Disease (Dementia with Lewy Bodies), in which small deposits of protein accumulate in the nerve cells of the cerebral cortex. The sufferer experiences persistent hallucinations, perhaps seeing a person in the same chair over and over. Here, the confusion can fluctuate such that a Carer might believe that the sufferer is 'pretending'. Parkinson-type symptoms like tremors or rigidity are associated with this type of dementia. As the disease progresses over several years, the sufferer experiences memory loss and his or her language skills will deteriorate.

Fronto-Temporal Dementia (grouped with Pick's Disease and Primary Progressive Aphasia) is a rare and slowly-progressing condition where the sufferer's personality changes, perhaps resulting in a loss of inhibition or sudden inappropriate rudeness or maybe a loss of emotional warmth and empathy. Over-eating or a craving for sweet foods is an indicator here (maybe I should get myself diagnosed?), as is a change in sexual behaviour. In this group, memory loss is not usual in the early stages, but a decline in ability to communicate sometimes gives the impression that memory problems exist. As the disease progresses, reading and writing skills deteriorate along with numerical skills. The sufferer will likely develop problems handling money. Some sufferers develop obsessive behaviours, with repeated hand-washing or similar activities. This group of diseases is characterised by more localised damage in the frontal or temporal lobes. Primary Progressive Aphasia attacks cells in areas of the frontal lobe particularly associated with speech. Pick's Disease is caused by abnormal or swollen cells or abnormal protein deposits within cells in the fronto-temporal areas.

In Mum's case, she has what's known as a 'mixed pathology', with the problem chiefly being Vascular Dementia but with some other damage present that could be due to one or several of the other forms listed above. I've certainly noticed a marked loss of empathy, her increased selfishness, and her preferred diet of sweet foods. This and her deterioration of abilities to deal with money give me reason to suspect that there's a fronto-temporal aspect to her condition, too. Then again, I have observed Mum having Lewy-Body hallucinations on many occasions over the past 5 or 6 years. She sees someone standing in a street and is convinced that she saw them standing in exactly that spot yesterday, and will not budge from the assertion, even if I tell her we were 300 miles away yesterday.

a brief history of Mum's dementia

I first became aware of Alzheimer's Disease in my teens. I remember a drama on TV where a woman was coping with her Mother's deterioration. There was one scene which stuck in my head where she found her Mum awake in the early hours of the morning, using the vacuum cleaner on the lawn. I remember that my own Mother found the play particularly upsetting, and she subsequently never tolerated any childish taunting that a slip was an early sign of Alzheimer's. It became a taboo subject in our house.

The next significant event, looking back, took place at my Sister's Wedding (about 12 years ago). My Sister had been living overseas and a lot of the planning for the event fell onto my parents. When we all gathered, a few days before the Wedding, we found Mum in a high state of tension, panicking about trivial details. We tried to laugh it off but then, during the Service, Mum suffered a Stroke which paralysed her on one side of her body. She recovered within a couple of days and all returned to normal.

When my Dad died, in 1999, I found Mum quite confused about a lot of things. I didn't fully accept her excuses that she was grieving and exhausted from my Dad's slow death, but then I didn't take any action at the time either. I suppose I couldn't deal with it on a subconscious level and managed to ignore the elephant in the room (hmm.. elephants are associated with a functioning memory, so not a great choice of expression). I do recall being pretty annoyed that my Father had done nothing to prepare Mum for coping alone: feeling that he should have familiarised her with the family finances, at least. It's easy for me to see now that Mum was already showing small signs of Dementia. Perhaps one reason I ignored what seems so obvious was that the subject was so off-limits in our family. Mum insisted that she was alright, and I was working hard at my new job 400 miles away, so I allowed her to carry on. She began to inflict a series of unnecessary and costly renovations on the family home, inspired (I suspected) by a desire for company. She kept saying that she was going to move, but then would spend thousands on some highly personal touch, usually carried out by one particular handyman (appropriately, it later transpired) named 'Robin'. It seemed that Robin was always there and jobs were invented to keep him around.

In 2002, my Mother finally decided that the time had come to move into a retirement apartment about 20 miles away from home. I was concerned that she would be moving away from an important support network of neighbours and friends, but I could see her point that the house was too big to manage. She also took up an offer from a Property Developer to fly her out to Spain to look at an apartment, and she came home having signed a deal and paid a substantial deposit. With both deals, Mum insisted on handling things herself, despite my offer to participate. I had strong misgivings, but was very busy heading into the final stages of a work-related breakdown at the time. I wasn't very surprised to hear that Mum had accepted a low offer for our home, knowing how easily swayed she was by anyone who took time to meet with her. Meantime, as the house deal went through, I realised that Mum was inconsistent over how many payments she had sent off to the Spanish property company. Again, I can't understand now why I didn't intervene immediately.

I finally arrived to help her move home only to find that Robin had got there before me and most of our furniture and memorabilia had been willingly handed over to him in gratitude. Mum told me how poor Robin's family were and how he had no pension to look forward to, forgetting that she'd also told me that he drove a Rolls Royce. So, we moved Mum into her new apartment, which she'd bought off-plan failing to notice that the view from the living room would be a brick wall 5 feet away. Robin promptly disappeared from her life, and Mum instead leaned heavily on the charming Salesman, living in the show flat, calling on him several times a day for advice and help. She scoffed when I told her that he would be moving on as soon as the apartments were all sold - which he did, of course.

I finally found an excuse to intervene in the Spanish deal when I realised that a year had passed since Mum should have received the keys. It turned out that nothing had been built. I asked the company to fly us both out to find an alternative apartment. I remember waiting at 'arrivals' in Barcelona airport and seeing Mum come through, beaming and bewildered and guided by two other concerned passengers. She looked so vulnerable that it broke my heart and scared me at the same time. The 4 hour car journey to the isolated development set me wondering how practical this deal was for Mum (who never drove down unfamiliar roads in the UK and didn't speak a word of Spanish). Over the course of 4 days, I found that Mum hadn't thought through how she would survive here and hadn't any ability to cope in this environment without a companion alongside her. She couldn't understand foreign exchange rates and couldn't even find her way back to her hotel bedroom without assistance. I helped her pull out of the deal, but I'm convinced we only recouped a fraction of what Mum had paid out. Mum accepted that the property deal had been a disaster and was grateful that I had intervened. 

We settled into a routine where she would ring me almost daily with some problem, which I would do my best to investigate and resolve for her. It was difficult doing so from a distance, especially when Mum couldn't read documents out over the phone consistently. Some companies, too, wouldn't deal with me without Mum present. Mum's Solicitor began talking about me registering a Power of Attorney over Mum's financial affairs. I stalled, feeling uncomfortable about it and convinced that Mum would dig her heels in once her mental capacity was questioned.

It seems to me that I finally woke up this year - woke from a half-slumber where I was half-aware of what was going on but hadn't grasped what it meant. I can't account for why this was so. The warning signs had indeed been there for years, I can see them now. It took a couple of family friends and relatives to finally shake me awake, to whom I'm grateful. Mum's decline has been fairly rapid recently. I don't know if this is a common experience, but it seems that my interventions (while necessary) have sometimes speeded up the progress of the Dementia - as if once Mum's getting help with something, that section of her brain finally gives way and she becomes helpless in her capacity to do that thing. However, there's really been no option but to go forward, for health reasons.

I've mentioned Mum's CT scan and diagnosis elsewhere this year. I think I've sufficiently covered the loss of her ability to cook, her loss of understanding around time of day, her recent inattention to personal hygiene and appearance. I just thought it might be helpful to tie her history up into one post to show the progression of the disease so far.

response

Once again, I am humbled to record another individual who dealt with a comparable situation himself rather than seeking care from outside. My respect for you, Sir, is very great and your "do the right thing" message resonates with my guilty conscience about how I've decided to handle my Mother's future care.

My Mother's condition likely stems from a stroke she had about 12 years ago, where she temporarily lost the use of one side of her body. She quickly recovered at the time, but apparently this episode leaves her more vulnerable than others to further TIAs. The pathology of her diagnosis was mixed, with evidence of many small TIAs and some additional deterioration that could be Alzheimer's.

Yes, Care Homes over here are expensive too, typically £700-£800 per week for anything half-decent. This is twice my Mother's income from her pensions. In the UK, if the individual has assets of less than £21,500 the State will either contribute or pay in full to enable her to go into Care. Unfortunately, in my Mother's case the fact that she owns her own home places her well beyond that boundary, and I will be selling her apartment to fund the shortfall. If she lives long enough to outlast this asset, then the State will step in to top up her fees. Finance is not a worry, beyond the fantasy of my inheriting something from her estate one day. I've come to terms with that after some soul-searching (my soul was under a sofa cushion).

Yes, I have read a lot of horror stories about staff in Care Homes, not only ill-treating their charges, but also drugging them to keep them somnolent and co-operative. I haven't seen evidence of  this in any of the many homes I have visited these past few months. However, I have visited places which felt wrong in some way, that smelled, or where it seemed the residents were not encouraged to leave their rooms. Believe me, I am going to make sure that my Mother is happy where she ends up, or I'll take her home with me again.

I have thought a great deal about the idea of quitting my job and caring for her myself. As you say, a salary even a fraction of what would go to a Care Home would be attractive. One of my dreams is to settle in the countryside of France, enjoy the warmer Summers and grow my own food. Mum's assets and income joined with mine would make this possible, and I would have fewer worries and more time for her, but the care I gave her could not be 24-hour, and I lack basic Nursing skills. More to the point, I'm ashamed to say that my temperament isn't suited to looking after Mum. It really is with the best of will that I have searched for a place for her, out of my belief that she would benefit more from people who are more patient and less emotionally-linked to her failings. I am denying myself a good chance of realising my dreams because I feel that it's in my Mum's best interests.

Your scheme for Elder Elder Care is an intriguing one, and I'm curious if anyone has tried it. One thing I would say is that many of the Senior residents at my Mother's apartment building treat her contemptibly, I suspect because they see their future before them (the Warden there agrees that the ones most vile to Mum are those closest to her condition). However, I'm sure the number of kindly, charitable Seniors far outweigh the nasty contingent.

The place that I have been happiest looking at organises itself as a 'village' of people, encouraging as much interaction and shared responsibility as the residents are happy with. I've met some kind people there, and Mum is enthusiastic as well.

I hope for the best. This seems "the right thing" for Mum and not a shirking of responsibility, but I welcome opposing views and anyone who can pin-point any self-serving thinking on my part.

Good luck to you, too, Sir. It seems to me that you are far from a burden for the time being, and I hope I'm still capable of celebrating, myself, when you reach 110.

Greg

comment from a reader

I hope with his permission, I would like to quote in full a comment I got from a gentleman going by the name anthropositor. This was left after my "Driving Miss Crazy" post, and he has some valid points to make (apologies for places where the spelling has changed to UK English - Blogger didn't allow me to copy and paste this and I had to type it out myself):

"I was once a fairly affluent travelling man. My Mom had passed away. Periodically I visited my Father who was in his late sixties, and a particularly challenging fellow to deal with. He sporadically drank a LOT of vodka. I was putting off the time that I would have to deal with the situation. My siblings, for good reasons of their own, could not or would not deal with the situation.

Clearly my Father was losing it. It was only a matter of time. Then I came back from a trip to find that he had had a stroke which had paralysed half his body.

This was twenty eight years ago. I looked into the care giving options, found them to be in excess of $2000 a month and elected to quit travelling to take care of him myself. I got him over his stroke and worked from home. Soon after his recovery I got married for the second time and got custody of my youngest Son.

Aside from the stroke, my Father continued to deteriorate behaviourally. It was indeed a challenging situation. My behaviour toward him was strained some of the time. I have some regrets about that. But ultimately, I did the right thing. No regrets.

Now I am about the age he was when I took over his full time care. He lived as well as could be expected for seven more years. For me this was an exceedingly difficult time, but I have never been sorry that I dealt with it the way I did.

I had a stroke two years ago which just made me stupid for a while. A pretty humbling experience. Fortunately my mental strength returned and then some. Your Mum is twelve years older than I am and her difficulties seem to be beyond simple stroke damage. Her situation is not likely to improve by much.

The costs of providing care for the aged are really extreme. You mentioned $100 per diem for day care. Full care would be double or more. And such care is often not exactly ideal. The young employees who work in such places often get as frustrated as you have been on occasion. When that happens, they are often not too inhibited with their irritation.

It strikes me that more should be done to set up situations in which lucid and capable old people do more caregiving for their less capable counterparts. They have some serious advantages in caregiving. They know that these things could ultimately happen to them, and maybe in the not too distant future. That alone makes them potentially much more understanding than youngsters are likely to be.

It is also true that many capable older folks need to supplement their income and would find elder care to be a good way to do it.

If someone in my neighbourhood made me an offer of say $1200 a month for continuous care around the clock for their loved one, I would certainly be considering the idea.

In the meantime, I will be doing my very best not to let myself become a senile hardship to my children. If I can remain lucid, ambulatory and capable until my one hundred and tenth birthday, I can't think of a better gift for my children or myself.

Good luck to you."